Not Ghosts but Human Beings: Human Rights of Persons With Albinism

Albinism, a rare genetic condition affecting one in 17,000 people worldwide, is characterized by limited or nonexistent pigment in the skin, hair, and eyes.

Persons with albinism experience increased susceptibility to skin cancer, vision impairment, and, discrimination that stems from societal misunderstandings of the condition’s cause; in parts of Africa, persons with albinism often experience physical attacks based on community superstitions that their bodies possess magical properties. In response to these attacks, the UN Human Rights Council (HRC) adopted Resolution 23/13 on Attacks and Discrimination Against Persons With Albinism on June 13, 2013. One year later, the HRC recommended that the General Assembly proclaim June 13 the International Albinism Awareness Day.

On July 25, 2014, as part of a year-long awareness campaign, the UN Human Rights office held a Google+ Hangout on the human rights situation of persons with albinism. Mona Rishmawi, Chief of the Rule of Law, Equality and Non-Discrimination Branch in the Office of the UN High Commissioner For Human Rights, moderated the panel, which includedMarta Santos Pais, UN Special Representative of the Secretary-General on Violence Against Children; “IK” Ero, International Advocacy Officer of Under The Same Sun (UTSS); Vicky Ntetema, Executive Director of UTSS in Tanzania; and Gary Foxcroft, Executive Director of Witchcraft & Human Rights Information Network. The discussion centered on two main issues: 1) the cause of discrimination and violence against persons with albinism, particularly in Africa, and 2) how to stop it.

According to the panelists, discrimination against persons with albinism stems from a lack of understanding of the condition’s genetic causes. In parts of Africa, Mr. Foxcroft explained, albinism is shrouded in myth and superstition. Many believe that persons with albinism are ghosts or have the power to place curses on others. Ms. Ntetema further noted that women are often blamed both for giving birth to, and failing to kill, children with albinism; they are often abandoned by their families, raising their children without support. According to Ms. Ero, who is herself a person with albinism, affected children face discrimination and bullying, and most women with albinism are denied access to education.

As a result of superstitions that their bodies possess magical qualities, persons with albinism often experience physical violence. Many women and girls with albinism, Ms. Ntetema revealed, become victims of sexual violence, as superstition holds that sexual intercourse with women with albinism cures HIV and AIDS. Mr. Foxcroft further noted that many people in Africa believe that the bodies of persons with albinism have magical powers that, when used in tinctures and potions, bring wealth or power to those that possess them. This often results, he said, in the mutilation and death of persons with albinism; witch doctors propagate this belief for their own financial gain; a person with albinism’s body can fetch between US $75,000 and US $200,000.

When asked about the role of individual states in protecting persons with albinism, Ms. Ero explained that states need to both reduce perpetrator impunity and raise public awareness of the realities of the condition. Over the course of seven years, only five percent of over 300 documented instances of attacks on persons with albinism were prosecuted. In addition to combating impunity through immediate, full, and impartial investigations into attacks, Ms. Ero noted that victims must have access to psychological, medical, and financial redress. She revealed that access has been hampered by discrimination against persons with albinism in court systems, citing a case in which a victim’s testimony was devalued because of the visual impairments that results from the condition.

As the Google+ Hangout came to a close, Ms. Rishmawi asked the panelists how to best ensure protection for persons with albinism. All five agreed that education of both the public and members of state parliaments is of paramount importance in combating discrimination and violence. Mr. Foxcroft emphasized that, unless societies fundamentally challenge the belief that bodies of persons with albinism possess magical properties, market forces will continue to drive demand for body parts. Finally, Ms. Ntetema noted the need to ensure prosecution of wealthy and powerful perpetrators of violence against persons with albinism, positing that once the potential for punishment is concretized, the violence will cease.

Ms. Ero concluded the Google+ Hangout on a positive note, stating that the passage of the UN Resolution in 2013 followed by the establishment of the International Albinism Awareness Day in 2014 have ushered in a new era for persons with albinism that represents a “light at the end of the tunnel.” Ms. Rishmawi thanked the panelists and called on all persons listening to use the upcoming year to stand up for the human rights of persons with albinism.

For more information on the human rights of persons with albinism, visit the UN HRC Advisory Committee website.